The Alzheimer’s Society launches the Dementia Friendly Awards to celebrate the efforts of individuals, groups and businesses working to make life easier for families affected by this disease, sponsored by Lloyds Banking Group and supported by The Telegraph
When my mother Ruth developed Alzheimer’s in her early seventies, about 15 years ago, the family rallied round. It wasn’t easy for us at times, but there was certainly nowhere else to turn. No one talked about dementia then except in hospitals or care homes. Shops and cafés weren’t welcoming; even friends seemed to shy away. It has always been isolating for people with dementia and their carers.
So, today, I couldn’t be more delighted to announce the first Dementia Friendly Awards, sponsored by Lloyds Banking Group and supported by The Telegraph, and established to recognise and celebrate communities, organisations and individuals across England who have helped to make their area more dementia-friendly.
The idea has arisen from the fantastic response to the Prime Minister’s national challenge on dementia, made in March 2012, to make Britain a better place for the 800,000 people with the condition.
Recognising that someone you love has Alzheimer’s is a very difficult thing to do – let alone admitting it to others. When it happened to my Mum, I was at a loss.
Ruth was 73 when we began to notice that she was becoming more than just a bit forgetful. One of the defining moments came in 2000, when my sister Barbara phoned to say that she had found Mum sitting at home staring at the washing machine. Mum said: “It’s funny, I can’t remember how to use this.” Instinctively, she wanted to hide what was going on, when really she knew something was wrong.
Over the next few years, Mum got worse. You’d have a telephone conversation, you’d finish it and she’d repeat it all over again. My maternal grandmother had dementia, too, and I remember my mother getting very irritated because you had to do everything twice. My grandmother had also a great desire to be independent, which my mother inherited. Mum would say: “Oh, I don’t need help with that,” and then she’d forget to do whatever it was, and you’d have to remember for her.
And so we – her loving family – did what we could. But it wasn’t easy; the outside world wasn’t very supportive. And many of her friends seemed to just drop away.
For example, Mum used to run a craft morning; she was always very much in charge and she loved organising people. But, as the illness took hold, her friends stopped coming. It was easier not to call round or telephone: they couldn’t be bothered to go through it all, explaining who they were and how they knew her. She became very cut off.
Throughout it all my father, Donald, a former pilot, was there for her. He found Alzheimer’s so difficult to deal with, and thought it was some terrible truth he had to keep secret. “We don’t want anyone to know, do we?” he’d say. He didn’t want Mum to seem anything less than perfect – because that was the Ruth whom he knew; the Ruth whom he loved.
He didn’t talk about her illness because it hurt him too much. My father was from an era when you didn’t really share your feelings and I don’t think he could express them.
In the early stages, he would get used to Mum forgetting things or doing things twice. Then my sisters and I would come along and say: “Why did you let that happen, Dad?” And he’d be really defensive and try to protect her.
I remember saying to him: “It’s not you, Dad. She’s in there somewhere.” It’s a very lonely thing to become a carer for someone who was once your partner in life.
We did have good medical help: a local doctor who was very on the ball and picked up quickly that Mum was in the early stages of Alzheimer’s. She was cared for at home at first, but then my father broke his neck in a fall and couldn’t look after her any more, so we had to put her in a home. The look on her face when we told her what was happening will stay with me always. “Why are you doing this to me?” it said. “You said you loved me, so why are you sending me away?”
As she deteriorated, there were occasional flashes of the person she was. When we used to go and visit her in the home, I often wondered whether it was easier for my father if one of us went with him, or if he just sat there on his own, in silent communication with her.
He was wonderfully understanding, but this was not his wife of 40 years. One day, when I was visiting her, an old man put his head on her shoulder and she said to me: “I know it’s not the right man, but it doesn’t matter now, does it?”
In 2007, my father died in his sleep and Mum had a stroke a few days later. To this day I am convinced that she had heard her carers discussing Dad’s death, and she understood that if he had gone, it was time for her to go, too. She died not long after.
Looking back, it was such a horrible time. What people need to understand about Alzheimer’s and any form of dementia, is that it’s a very nebulous disease. It’s not like a cut where you know what you’re dealing with, and you can patch it up. People don’t talk about Alzheimer’s or dementia because it’s frightening.
Yet the more we face up to and talk about dementia, the more people throughout society will start to understand that a little compassion and kindness can go a long way.
I hope the Dementia Friendly Awards will inspire more shops and businesses, social groups and individuals to consider how we can all support families going through this illness.
Alzheimer’s is cruel and heart-breaking, but it is not impossible to bear. Memories are precious – and even Mum’s illness could not take away my happy memories of time spent with her.
The biggest thing I learnt is that you can’t predict what is going to happen with dementia. You have to take life as it comes. That means waking up every day with the person you love, giving them a hug, and just being there – in the moment – for as long as you can.
Lynda Bellingham is an ambassador for the Alzheimer’s Society, alzheimers.org.uk